Routine

Sorry for not posting for a while. I have been back to work full time for the past couple of weeks, and we are adjusting to our old routine, which we are so thankful for! Kade is doing exceptionally well with eatting! So well that we have not had to use the feeding tube at all this week. The surgeon said that if we do not use it for 3 weeks, we can take it out! Last week we did have to go back up to Children's to have the surgeon look at the area around the button. Troy and I noticed it was hard and something was almost poking through the skin. Turns out it was a stitch that had come undone, and it was nothing to worry about it would eventually dissolve. The surgeon stated that if we saw something blue poke through the skin we could just trim it...I said that we would just come back for him to do the trimming!! So far nothing has poked through and the area is getting softer.
Hanna was not happy when we pulled into the garage at Children's. The first words out of here mouth were "What are we doing here!?" I explained that they wanted to look at Kade's button and that we were ALL going home together TODAY! She accepted that and we were off. She didn't skip a beat when it came to the elevator, and was all over the Drs and nurses when we stopped by the PICU to visit. Everyone was so excited to see how well Kade was doing, and Dr. Trempher got a snapshot with his iphone.
Kade is doing very well at daycare, and Hanna just loves him to pieces every chance she gets. Kade has taken a couple of steps for us, but still perfers to crawl.
I will try to post weekly, but as the saying goes, no news is good news!
Thanks for checking on us!

October 5

Kade is still doing great with his eating! He struggled with drinking a little, but has overcome his initial reaction to automatically spitting it out. He loves to feed himself, but has also become more accepting of being spoon fed, which really increases our food options! He was eating a lot of peaches, bananas and puffs for a couple days until I was able to feed him regular baby food with a spoon. We are working on decreasing the need for tube feeding during the day, which allow for more freedom to move around.
Speaking of moving around, Kade has taken a couple steps!! He is definitely getting brave, and he has the bumps and bruises to prove it! He has a lot of friends as daycare that are walking, so I hope that helps encourage him.
Kade will start going to daycare 3 full days a week. I am back at work and enjoying getting back to our regular routine. Hanna is really happy to have here brother back at "Hearts" with her. Their classes are outside at the same time, so they get a chance to interact with each other.
We are looking forward to a month without Dr appointments! Our next visits will be in November when we see the surgeon for our followup, and Dr. Russell for Kade's 15 month appointment. Thank you for continuing to check on Kade's progress!

Eating!!

We have been very busy at our house these last couple of weeks, a lot has changed!! The best news is that Kade is eating!! He is really into finger foods and wants to do it all himself. We still give him formula via the feeding tube to make sure that he meets his nutritional needs.
The last time I posted, Kade had just had another swallow study. The days following that he was vomiting 3-4 times a day. We treated it as a virus, running Pedilyte continuously for most of the weekend. Then on Sunday night we offered him some banana and he started to put it in his mouth and swallow. He didn't gag at all! We were so excited we ended up giving him the whole thing! He has been eating ever since!!
Today is Kade's first day back to daycare and my 2nd day back to work. I have only called daycare twice so far :-) When I spoke to the teacher after lunch, she said that he had fun when they went outside and he ate a good lunch, both a big relief for me! We will continue to go to Madonna for therapy 3 days a week for now, so we are easing back into work and daycare slowly on Tuesdays and Thursdays.
Thank you to all of you for your continued thoughts, prayers and support.

Wednesday (9-16)

Yesterday's swallow study showed that Kade is doing better controlling food before swallowing. We will begin to experiment with nector thick liquids as we work on trying to make him feel hungry. It is hard to meet his nutritional goals, and try to make him feel hunger, there are not enough hours in the day!

Yesterday Kade also had his first day of pool therapy. He really enjoyed it, slashing and kicking. Today at therapy, he impressed them by crusing around furniture. He is on the right path to walking, which is wonderful because my back is killing me!!

Monday (9-14)

Things are great here at the Loseke household. Kade keeps amazing us with his fast recovery to age appropriate activity. He is getting into everything! We love it!!
We will be going in for a modified swallow study tomorrow morning. Kade did very well last night with a sippy cup of thickened water. Multiple times he took drinks and swallowed without gagging. This morning he took about 5 bites of thickened formula that I fed to him with a spoon without gagging. We are very pleased with these small victories! We will post the results of the new study when we know more.
Thank you to the Random Acts of Kindness Angels for your generous gift to our family, it is greatly appreciated.

Friday (9-11)

Thank you to all of you for your Birthday wishes to me today. The best gift has already been given to me, to have my family back together under one roof!! We continue to be blessed with Kade's recovery. He can get from the kitchen to Hanna's room in approximately 5 seconds! If he sees her door open, you can guarentee he is heading that way. The other night she asked how to spell "Kade stay out of my room!" Obviously, everything is pretty much back to normal around here!

Kade is doing well with tastes of food. He continues to accept more into his mouth and has success with swallowing and not vomiting. The only way to make your swallow stronger is to swallow, so that is what we work on. He doesn't fuss as much as he used to when we put him in the highchair, so that is a great sign that he is accepting the "process" of eating. We will be going in for another swallow study next week to see if there are any changes from the inital study done at Children's.

We did finally get approved for Medicade and for the Aged and Disabled Waiver! Medicade will allow us to get the extra feeding and swallowing therapy needed, since we were running out of visits from our primary insurance. LPS will also begin to work with Kade, offering Occupational Therapy along with feeding and swallowing. Thank you to all the Taxpayers, we will not disappoint you :-)

Thanks again to all of you for keeping up with our little miracle!

9-3

Kade is crawling...everywhere!! His only limitation is his "cord" when it is hooked up for feedings, so now it is more like a leash :-) He is enjoying his new found independence, and the rest of us are getting back in the mode baby proofing the house again!

Our therapy schedule is now 3 days a week. Kade is doing well with tastes of food, but still not swallowing without difficulties. We continue to include him in all meals by putting him in his highchair and giving him a spoon and a dish of something such as pudding, pureed peaches or rice cereal. He usually just makes a big mess, but does end up getting a little in his mouth via covered fingers. We are grateful that he allows items into his mouth, as that would be a huge challenge to overcome.

I recently attended a group for families that have children with feeding difficulties, and learned a lot just from one meeting. In today's society, the problem is usually eating too much, and people understand that, but when a child doesn't want to eat it is very misunderstood. Eating is just another thing that we all take for granted. In the first year of life, there are so many different things going on in the mouth and brain that make eating possible. We were fortunate that Kade developed most of the skills necessary to eat before he became ill, whereas a preemie in the NICU for months may never learn to eat without extensive therapy.
Kade had tubes down his throat for many weeks, a machine breathing for him, and nutrition going directly into his blood stream, all saved his life, but also made his little body forget how to do some things. Obviously, the physical stuff is coming back quick, but it will be a while before he is eating enough by mouth to satisfy is daily nutritional needs. We pray daily that as he becomes physically stronger, the rest will fall into place.

Home health came again on Tuesday and Kade weighs 27.9 lbs!! We do not see Dr. Russell again until next week, but we are going into see a PA today for a cough/cold he has. Hopefully his ears will be clear and we will just have to ride it out.

Last night we went to the fair to the Newsboys concert and ran into one of our favorite Respiratory Therapist from Children's. We had made a connection in the hospital, so it was a blessing to catch up with her and meet her beautiful family. She gave me the bracelet she was wearing, which bears a beautiful verse I know a lot of you are familiar with, and it says it all. Thank you Chantel.

"I can do everything through him who gives me strength" Philippians 4:13